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PBC Foundation
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Doctor Baffled

Hello everyone. A lot have been going on last few weeks so I haven't been on site for a while. So here is a summery;

I had a MRCP and bloodwork done. I saw my heptologist today. He is baffled (my mom was in room with me she saw his baffled look also). My results showed no scarring on liver and no inflammation in my bile ducts. My enzymes numbers are down but still not normal (URSODIOL is working he said but numbers are still too high for his liking) he wants me to get new blood work done asap and an ultrasound soon as approved. My lower legs and ankles as well as my abdomen were swollen (he said not related ... that s not what I've read)

He said my PBC is staged at 0.... that makes no sense.

I've been throwing up mostly bile for hours every few days after I've eaten ... he said nothing about it.

I've started seeing a psychiatrist, cause I'm looking it.

My Best friend .... past away 3 weeks ago rite in front of me (heart failure) she was only 56 .... I am devastated. So needless to say this stress on top of all my health battles have spun me out of control.

I am in bed more than usual, all of my symptoms are amplified. And now with not much of an answer from the doctor. I don't know what to do.

Bless you all

3 Replies

That confuses me as well. I've never heard of stage 0🤔. Wondering if he is saying that you do not have PBC? Also when my ankles, hands & abdomen were swollen it was do to hypertension in the portal vein of my liver which causes varicies, I have grade 2 varicies with five banding taken place over the last year & a half with a 2 pint blood transfusion a year ago this past May. I am also at stage 4 PBC, with stage F3-F4 cirrhosis. Now, please remember that your situation could be different. Maybe you should get a second opinion or have your heptologist explain a bit more on our level (meaning not in doctors terms but in the patient's terms). Please keep us posted😉.

Stay strong❣️



Also wondering, do you still have your gallbladder? I had mine removed at 19 yrs old. I too threw up bile frequently to the point of dehydration due to my gallbladder not functioning properly.

I did start posting to you before reading all of your statement, I tend to jump the gun from time to time so I apologize. I am extremely sry for the loss of your friend. Life is such a unexpected journey that's for sure. Prayers to you & yours during this difficult time❤️🙏


My gallbladder was removed June 2016. After a violent attack er visit they admitted me and removed gallbladder the next morning.


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